5610107 LIVE OUTCOMES AND BIOMETRIC MONITORING: POTENTIAL IMPLICATIONS FOR PATIENT QUALITY OF LIFE IN SICKLE CELL DISEASE
Authors: O.A. Agrippa, K.Z. Summers, K.A. Anie, P. Telfer, S. Lugthart
Journal: HemaSphere (2023)

Background & Aims: There remains limited understanding of factors such as patient quality of life on a day-to-day basis in Sickle Cell Disease (SCD), with monitoring often limited to annual patient reviews and clinic attendances within a healthcare setting. This study aimed to explore an approach to assess quality of life in patients with SCD through a remote monitoring ecosystem accessible from patients’ own homes, and with this, what potential impact such tracking may have upon patient wellbeing. Methods: The patient ecosystem provided a clinically validated wearable for live remote monitoring of metrics (e.g., activity, sleep, and heart rate); a digital portal for input of patient-reported outcomes (PROs); and a digital platform of live and retrospective insights, healthcare timelines, and data entry – a ‘digital patient wallet’ – encapsulating their combined data, including medical records. Patients provided informed e-consent to participate and for analysis of their de-identified data, with no dropouts. Patients who had (1) participated for at least 5 months, (2) recorded a minimum of 5 EQ-5D scores across their first 30 days with the programme, and (3) recorded a minimum of 5 entries across the most recent 30 days were analysed (n=23). Percentage changes between the first and most recent 30-day average EQ-5D scores were calculated, to assess any potential changes since patients began utilising the ecosystem, as well as the statistical significance of any differences in EQ-5D between these timepoints. Results: In comparison to their initial 30-day average, 78% (18/23) of patients showed an overall increase in average EQ-5D score by their most recent 30-day period, with 35% (8/23) showing a statistically significant change (p<0.05). In contrast, 22% (5/23) of patients showed an overall decrease in EQ-5D, however, only 4% (1/23) recorded a statistically significant change. Early trends highlight a potential, albeit not statistically significant, emerging link between patient engagement rates with EQ-5D reporting (number of entries/days since first entry) and the percentage change in their EQ-5D score, with increasing engagement rates correlating with increasing percentage changes in EQ-5D score.Conclusions & Future Steps: This work provides an early look at the potential impacts consistent monitoring of PROs may have on patient wellbeing. While not necessarily a causal relationship, it highlights early indications that this form of PRO monitoring may be beneficial to patient outcomes, potentially through heightened engagement with patient self-reporting and therefore self-monitoring to support disease management and behavioural changes. However, such findings may also be influenced by factors including the wearable biometric monitoring component, health events patients may have experienced over this period, as well as differences in the time of year patients joined the programme – environmental factors and temperature known to impact patient wellbeing in SCD. A key goal will be to increase the period of longitudinal data collection for more in-depth comparison within a larger volume of patients. Future steps will incorporate direct causal analysis, investigate whether these changes are impacted by each individual’s starting point, and explore any associated changes in patients’ physical health – building a stronger understanding of patient outcomes and quality of life in SCD, and the approaches that can be taken to improve this. References 1. Tewari et al, Haematologica 2015; 100:1108–1116 2. Brandow et al, Am J Hematol 2013; 88:37-43